Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
All Resources Treatments A-Z Personal Assistant Help Center Crisis
Powered By
Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Should I get a 2nd opinion from a myeloma specialist...

A MyMyelomaTeam Member asked a question 💭
Heart of Texas

like my mind, body and symptoms are telling me to, or should I just listen to my primary doctor and my general oncologist (both respected and excellent doctors in their own fields) who both agree with each other that my symptoms are not MGUS related?

They feel like my hip, rib and back pain are simply arthritis, as was seen on a nuclear bone scan in 2025 (which are not good at detecting osteoclastic activity as seen in myeloma), and in my recent PET/CT scan (which is a gold standard test if you… read more

2 days ago
 · 
Reactions

Answer Summary

Members overwhelmingly encouraged seeking a second opinion from a dedicated multiple myeloma specialist, with many sharing personal stories of... Read more

Members overwhelmingly encouraged seeking a second opinion from a dedicated multiple myeloma specialist, with many sharing personal stories of delayed diagnoses that led to serious outcomes like spinal fractures and advanced disease. Several members noted that MM specialists offer deeper expertise, often catching what general oncologists miss, and that organizations like the Multiple Myeloma Research Foundation recommend having a specialist on your team. A recurring theme was to trust your instincts, as many members who listened to their gut and sought specialist care felt it made a meaningful difference in their treatment and peace of mind.

A MyMyelomaTeam Member

Yes always

2 days ago
A MyMyelomaTeam Member

I definitely support you on the 2nd opinion for your peaceof mind and to
know exactly what is going on .To be able to accept the situation and be
positive to the treatment. Stay Blessed.

2 days ago
MyMyelomaTeam

This is such an important question, and the fact that you're asking it so thoughtfully — with this much detail and self-awareness — says a lot. Trust in your medical team matters, but so does trusting yourself.

Getting a second opinion from a myeloma specialist is not only reasonable in your situation, it's something many Show Full Answer

This is such an important question, and the fact that you're asking it so thoughtfully — with this much detail and self-awareness — says a lot. Trust in your medical team matters, but so does trusting yourself.

Getting a second opinion from a myeloma specialist is not only reasonable in your situation, it's something many people with MGUS and concerning symptoms are encouraged to do. It doesn't mean your current doctors are wrong — it means you're being an active partner in your own care. Here's why a myeloma specialist consultation makes particular sense for you:

- Family history — Having a first-degree relative with myeloma is a known risk factor that warrants closer specialist attention
- Symptom complexity — Bone pain in multiple sites, night sweats, fatigue, nausea, and a palpable lymph node together deserve a myeloma-focused evaluation
- Imaging limitations — PET/CT can miss very early lytic lesions, and nuclear bone scans are not sensitive for myeloma-related bone changes
- Pacemaker/defibrillator leads — Since MRI isn't an option for you, a specialist may know of alternative imaging strategies
- Baseline bone marrow biopsy — Some myeloma specialists do recommend a baseline biopsy earlier, particularly when symptoms and risk factors are present, to better understand what's happening at the cellular level As one MyMyelomaTeam member put it: *"I learned early on from my research to seek a second opinion and to seek out a specialist."*

Specialty myeloma centers — such as those at Dana-Farber, Mount Sinai, or Penn State — have dedicated teams who focus specifically on MGUS, smoldering myeloma, and early myeloma detection. They see these cases every single day. A second opinion isn't about dismissing your current doctors. It's about making sure someone with deep myeloma expertise has reviewed your full picture — your symptoms, your labs, your imaging limitations, and your significant family history — before defaulting to "watch and wait."

Your instincts deserve a seat at the table too. 💙

2 days ago
A MyMyelomaTeam Member

Hi, that is your decision to make in getting a second opinion. If you feel you need to get a second opinion, do it so you can have peace of mind.🙏🏽

1 day ago
A MyMyelomaTeam Member

Sharing

I want to add a very critical piece of advice to this discussion based on my own direct experience. If your mind, body, and symptoms are telling you that something is wrong, please do not hesitate to go and see a dedicated Multiple Myeloma Specialist immediately.From my own journey, I can tell you that seeing a specialist is a massive advantage because they truly understand the hidden nature of this disease
I am telling the clinical truth.When my symptoms with shoulder joint arm on both sides, high fever 39 degree first started, general doctors after one another checked my body and kept guessing wrong. They told me I had 'Suspected TB,' heart attack 'pneumonia,' and a 'severe lung infection.' They kept treating me for the wrong illnesses. It was only when I was finally referred to a senior hematology consultant who was a professor and specialist in blood cancers and that the truth was revealed. Within just 3 to 4 days, he correctly confirmed that I was fighting a high-risk, aggressive, and incurable type of Multiple Myeloma [lGeneral doctors are excellent in their own fields, but early myeloma bone destruction is sneaky and can easily hide on standard nuclear bone scans or early PET scans.
If you ask for my experience, I will tell you 100%: Yes, go for that second opinion with a specialist. Do not delay or wait hold absolutely no regrets or bitterness about my path. Every patient's body reacts individually [ Today, my myeloma remains completely stable with no M-protein detected for 3 years my lung successfully shrinking thanks to targeted precision medicine and I am at total peace because Allah is with me, and my doctors are doing incredible work.
Trust your instincts, fight for an expert, and take it . We are all praying for your peace, comfort, and clarity!

Do Not Give Up
Never Say Die
You Can Make It
TOGETHER!

Mohammad

1 day ago

Related Questions

View All
5 Ways To Find and Work With a Myeloma Specialist: Advice From People Who’ve Been There
Myeloma and Ethnicity: Is Race a Risk Factor in Multiple Myeloma?
Creating a Positive Outlook While Living With Myeloma